Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
So far the Oral Chemo has only made me abit drowsy, and a bit of a headache, sometimes, but otherwise, so far so good. The explanation of the Stroke damger is that the WBC are rather sticky, and since I have a history of Arterial problems, i.e. Caroted arteroes 70% blocked, TIA some 20 years ago, I do have cause for concern about the Haemo's warning.
Just hope a period of theis Oral Chemo will bring the WBC down and/ or stop it going up.
As usual, otherwise I feel just fine. But the position is a little fraught, and does make me a bit worried!!!
When are you off on your cruise.?
XXX Christopher.
Christopher.
Anyway, the blood was not new, someone else had it first, and for sure they forgot the shot of Vodka in it. !!! Cheapskates!!!
Christopher.
A month from tomorrow, I travel to the LA area to begin my odyssey. We five fly from LAX to Rome the following morning. I'm not looking forward to that part because I tire easily & don't sleep well sitting up.
I just finished reading all 155 postings here and I'm amazed by the vast knowledge shared and the support offered to near strangers with one common thread.
My husband was diagnosed with MDS 7-21-09 after dealing with anemia since 2006. The first Bone Marrow Biopsy in 2006 did not indicate MDS and his second biopsy was more definative. Diagnosis was IPSS Intermediate 1 with Hemoglobin 9.7 and WBC 2.5, Platelets 220. Both WBC and RBC being low is the concern. He has fought two autoimmune diseases too....vitaligo and urticarial vasculitis. The IPSS indicates prognosis of 3.5 years.
He began procrit injections immediately and after 5 weeks his hemoglobin rose from 9.7 to 10.0. He feels much stronger and has much better color and more energy. His oncologist recommended continuing with the 40,000 units of Procrit weekly to see if he continues to improve.
He turns 72 in October and I am just 54. He is a fighter and we're facing this together. I have found both comfort and distress in reading all your postings. We're scared of what the future holds and plan to watch the "Bucket List" movie soon so we can then take advantage of his current strength.
Wow - I'm working full time in our depressed local economy. While I want to continue in my work (I've been working for this employer for 12 years) I also want to provide the necessary support and companionship that my husband will need to cope with whatever his future holds.
Thanks for listening...I'll check back often to follow your own personal updates.
Gayle Najera - Bend, Oregon - USA
You have more courage than I have in reading through all 154 replies, on this particular series.! Congratulations.
When people ask me how I am, I usually ask them " do you want my opinion or that of the Haematology Consultant" It is quite amazing that I feel fine, and my only problems are that the anaemia kicks in and I want to doze off.. However my consultant tells me I am in danger of a stroke or severe infection, either of which could cause the family to rush around buying wreaths of flowers, and a new black outfit, and set them wondering as to what will be the menu at our traditional British Wake after the funeral!.
Yes it is worrying. More so for my wife and children than it is for me. I have had this problem for just over a year, and quite got used to it. I hate the thought that my life might come to an end in two to five months, but then even doctor's read the wrong books from time to time, and give out pessimistic readings when they do not really understand their patients determination!
Your husband sounds to be at a fairly early stage. You will probably have him around for much longer than you currently think, and in his photo he looks great to me.
Just remember there are many of us out in the big world, with the same problems, and I highly recommend a splurge of written words on this site, every few days or once a week, as a means of getting it out of your system.
If you have a sense of humour keep laughing. Give your husband a big hello from me, most of those who have MDS seem to be ladies, so whilst I could wish he did not have MDS, I send him a warm welcome and my very best wishes.
Best Regards
Christopher, British and proud to be so.!!!
We had a half dozen or so members writing in for a while, but what's happening with them, I have no clue. Chris & I are holding the fort.
I see my hema a week from today, so we'll see whether I'm above, at, or below the magic number (hemoglobin 10.0 on my last visit).
This Dr will be new to me, as my original Dr moved back east. Another Dr may give me a different perspective; we'll see.
Chris, one of the things I've noticed in the last few months is a high pulse rate after the least exertion. Do you experience that?
We all laughed a few years ago when following her death I wanted to keep my mother's electric seat that transported her up a flight of stairs from her garage into her home. We never dreamed of needing the electric chair ourselves but it may become a chore for my husband to climb the stairs to our bedroom. Now I'm glad we've got it stored in the garage as it may come in handy...and they're expensive!
Gayle
Wow, a moving stair seat! Yes, it could well come in handy.
Lou and I have been married for 31 years (and they said it would never last - ha!). He's a retired police lieutenant...retired in 1992 following a heart attack. I married my boss...I was a police/fire dispatcher.
My mother moved to Bend in 1995....she passed in 2006. I'm the baby in the family with three older brothers. Lou's mother, father, sister and brother have all passed away. He does have a daughter who is 50, but we don't connect with her much.
Lou and I are trying to focus on planning a fun couple of years with trips to places we've always wanted to go. We haven't been to Vegas since we got married in 1978, that would be fun. He's been afraid to fly for years but is considering a trip to Hawaii to visit one of my brothers and his family.
That's about it....off to another fun day at work!
Gayle
Been for my 14 day blood test and consultation with the Haematologist. One week ago, before I started n the Oral Chemo, my wbc were at 32. Today they are 3.4. Wow......!!!!
Hemoglobin gone up a little. Cut down on Oral Chemo to 75% of what I took last week. No blood transfusion in next 14 days. Platelets down unfortuneately.
I am very happy. Hope pride does not come before a fall, and I mean "drop down on yer face " not "the American Autumn."!!!!!
If I am not to have a blood transfusion with Vodka, must get the bottle and tonic water opened. Just for medicinal reasons of course.
Love to all.
Christopher.
Got a call on my next appointment, which was supposed to be this coming Wednesday. The gal tried to foist me off till the end of the month, but I told her about my upcoming European trip, & that I needed to be in there much sooner. We finally settled on the 14th.
cHRIS.
Chris - they tell you to be a fighter, but sometimes it's better to relax and enjoy where you are - live in the day.
Keep writing...you two are an inspiration to both of us. Thanks so much.
Gayle & Lou Najera